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Worry a Day: What’s in a name? We need a new name for cluster headaches September 30, 2009

Posted by lizrosenberg in Uncategorized.

Trigeminal cluster headaches are hideous. Ask anyone who’s ever had one. Go to a site like Clustrbusters, just google the words. It’s pretty terrifying.

Since last October I’ve been suffering from these — whatever they are. I’ve been to at least twelve doctors and two hospitals. It’s easily misdiagnosed– as a brain tumor, as MS, s seizures, as trigeminal neuralgia, as migraines. In my case it feels like someone is shooting burning arrows into my head, face and neck, using electrical voltage. If I don’t do anything to stop it (in my case, some medicines help a litle, including verapimil, klonopin, B12, but mostly, exercise in fresh air) I get dizzy, and start to see purple flashes.

The pain is comparable only to labor. It’s all-consuming, it takes your mind away. It lasts anywhere from 20 minutes–if you are lucky and intervene in time– to a few hours. It feels almost mythic, like you offended the gods and they now are punishing you. When it’s over, like labor, you almost forget it ever happened. You can’t quite remember what the pain feels like till the next attack. Then it’s nauseatingly familiar. It responds to no pain killers. Even medicines that work on migraines don’t work on most cluster headaches.

The other nasty fact about clusters is they are so individual to each person. One person might get dizzy. Another might throw up. Some always have it on one side of the body. Some people feel it first in their gut. others get what they call “shadows” in the head. There are dozens of possible treatments. Most of us try several before we find anything that works.

But I am a word person. So one of the things that troubles me most is the lack of language to describe the overwhelming, all-consumingly powerful experience of these events. It feels more like a seizure than a headache. It  feels like you’re dying, like your organs are shutting down. What’s more, in the midst of one, out walking it off at two or three a.m. marching through snow, or sleeping in my car because I can’t bear to breathe in stuffy air or have the people I love watch me in agony– I think, if someone came along right now with a gun and threatened me, I’d probably say, Go ahead and shoot. So we need a name that at least suggests what this feels like.

The other contender– Horton’s Disease– is worse. I picture that adorable Seuss elephant sitting on an egg or hearing a Who. How bad can THAT be? We need a name that sounds like Voldemorte’s Syndrome. Crutiato would be ok. Cluster of course leads one to think of cluster f-cked but that it not printable, and it would be embarrassing, for instance, coming to a concert hall and explaining, I have to sit near the door in case I get cluster f-cked. I have found it easier to say I get seizures and may need to suddenly leave.

I’m throwing the floor open to suggestions. But cluster headaches sounds like a bouquet. It sounds like, at worst, a handful of used tissues. It doesn’t sound like the mysterious, often incurable, hard-to-fathom torture that it is. It only affects a tiny portion of the population. We are the tortured elite. But we deserve a name, anyway, that strikes fear into the listener. Those of us who survive these attacks, sometimes night after night, sometimes 10 or 12 a day for weeks on end, are anything but wimps. If someone asks what’s wrong with me, I’d like them to gasp a little. What they hear instead is “I get a little bunch of headaches.”

I’m hoping someone will come up with a name the medical establishment is willing to use– something we can spell, and pronounce, something accurate and ominous. Any suggestions?